Tuesday, March 28, 2017

The National Walk for Epilepsy, Revisited

     Saturday was a Mary Poppins kind of day...practically perfect in every way. I experienced almost every range of emotion and connected with people in person, going into D.C. twice.
     When the day started, I was both nervous and excited about the Walk for Epilepsy and about my first assignment as a reporter in a long, long time.
     Then, at the last minute, I said yes to another deadline because it was an opportunity I couldn't refuse.
     Faye, an award-winning blogger in London, asked me to participate in her blogging marathon in honor of Purple Day. The topic was positive things about epilepsy, a favorite of mine. (See previous post.)
     As I got ready for to head into D.C. that morning, I was both excited about the adventures ahead of me and nervous that maybe I had agreed to do too much at once. Either way, I was motivated to get out and see for myself.
     Right after getting dressed, I had a mild seizure that improved my mood immensely but didn't do anything for my memory. I almost forgot to wear my little medical charm before getting in the Uber to take me on my way.
    The driver was originally from Pakistan, and knows my neighborhood because he worships at the mosque around the corner. I told him I had attended an opening ceremony at another mosque a couple of years ago when I was teaching English to adults.
     Both of us agreed that we have similar beliefs, and I told him I wish everyone else could see it that way and stop fighting about it. The conversation lifted my spirits so much I barely cared when I arrived at the Metro to discover the train was behind schedule and I had to wait for half an hour.
     The train was packed with cherry blossom tourists. I sat next to a tall, young guy who was so handsome it was hard not to stare. His white cane told me he wouldn't have seen, but still, I didn't.
     I looked up to see if the woman with him wanted my seat, but she chose to stand on the other side and explain various stops and how to maneuver through the Metro system.  Her advice was good, so I paid attention.
     At one point, she asked if he could tell the difference when the train suddenly filled with light after being underground. He said that he couldn't. I tried to imagine that and then wondered: What things can he "see" that I cannot?
   
     Many of the events at the epilepsy walk were winding down by the time I scooted around tourists on my way to the Washington Monument. I was beginning to fear missing my Twitter buddy, Tracy, but still couldn't resist stopping to take pictures of the more comical sites in front of the White House.
     My postictal bliss continued.
    I made it to the event in time for the expert panel, quickly scribbled my question on a piece of paper, and waited. It was hard to pay attention because I was so anxious to see what the response would be. When I heard my question being read aloud, my heart went, "THUMP-THUMP-THUMP!" with every word.
      I included my seizure type and age at diagnosis, the euphoria and my wish to control it rather than be cured. I even included my age to let them know how many years of experience I have, that I am not a novice in this field.
     "Am I the only one?"
     That was my question this year.
     The long pause after it was asked and the way the four doctors looked at each other was my answer. Yes, they had heard of my seizure type but none had actually treated a weirdo like me. When they began to use catchphrases like "aiming for zero," some people in the crowd began making sounds of disgust, as if I had suggested we all toss our pills and seize the night away right there on the Mall.
     I waited until the experts were answering another question to exit. Still, I was obvious enough to ensure anyone like me, hiding in the crowd, would know there is no reason to be ashamed.
     The people at the Talk About It! tent calmed me and listened as I explained what I had been trying to say and how I now felt more frustrated and isolated than when I arrived. They gave me time to get myself composed before videotaping and even allowed for a second take on the ending because I was trying way too hard the first time.
     By then, I was ready to face the experts again and took a seat in the front row.
     The doctor from southern California was back this year, and I wanted to listen more to what she had to say. Her best tip involved relaxing by taking deep breaths like an opera singer. (I already tried it and like it much better than those "calm, soothing breaths" most people recommend.)
     Just as the panel concluded and I stood up to leave, someone called out my name from a few rows back. It was Tracy! We hugged like old friends even though it was the first time we had ever met in person.
     I walked with her back to her hotel, mad at myself for not planning better, as she was about to check out and head home. She told me more about her daughter, Amber, who died from sudden unexpected death in epilepsy (SUDEP) last fall.
     When we arrived at her hotel, I hugged her again, at least two more times, extra tight, to keep me strong until next year's walk. Then, I headed to the nearest Metro station for another long wait.
     Only once while I sat there did I wonder, "What if it happened now? What would I do?"
      I pictured myself, shuffling along with the crowd, knowing the way because I've done it so many times before, and had no doubt I could do it and find my way back home.

Sunday, March 26, 2017

I'm the One Who Doesn't Want to be Cured

 

    Others write about epilepsy as if it is a stalker, waiting to grab them when they least expect it. It's my oldest friend, one who is always there for me if I need a quick getaway from life but my conscious mind doesn't realize it.
     I'm not sure where it takes me, but the road is covered with childhood memories...My aura typically comes as I remember something from my elementary school days and then become "sucked into" that place and time again.
     Even as I look around and realize it's 2017, and I'm having a seizure, I cannot fully participate in this time and place because my mind is there. I can force myself to talk as this is happening, but it's very hard as I pause to think and then say each word. (I posted a video to YouTube this morning of myself talking while experiencing aphasia.)
     When I come back, I almost always feel better than I did before...Like I'm walking on sunshine.
     Sometimes, I'm giddy and silly, as if I brought a bit of my younger self with me to entertain my family.
     Other times, I return with intense spiritual feelings, as if I have been in the presence of God, deeply connected to every living thing around me and ashamed for time wasted on doubt. (I like to call it that Lion King feeling.)
     It's too difficult to explain without sounding like a crazy person.
     That was my fear during those six years that it happened but I didn't know its name. Before I was diagnosed at age 22, it seemed the only explanation remaining was something mental.
     So by the time I found out its name, I was already comfortable with its predictable weirdness and warm afterglow. It helped that a family member made the introduction,  taking away the initial alarm that comes with the word, Epilepsy.
    My big sis wasn't a full doctor yet but already knew the rules about taking medication and getting blood levels checked and folic acid supplements. She also knew which books I should read to better understand my brain after the official doctors confirmed her suspicions.
     That's how I know there are others like me...people with temporal lobe epilepsy who do not want to be cured and who describe their seizures the same way I do, with a glazed, faraway look in their eyes but inability to put into words what it's like to go there and come back, again and again and again.
     Would you be eager to give that feeling up, knowing you might never get it back again?
     By my estimates, I've made the trip around 1000 times, mostly in the late 1980s and over the past couple of years. It's always that same familiar feeling..a dash of panic followed by recognition of what's happening and then the trip.
     I didn't realize until I was able to videotape myself that it lasts minutes rather than seconds and that I sometimes pass completely out but forget that it even happened. That was a big reality check for me in terms of its power to deceive and make me forget how dangerous our journeys together can be.
     Trying to describe all the gifts this sacred disease has given to me would be tedious because I would try to base it all in neuroscience rather than my own experience and theories, which would be super-boring. Being able to write about anything easily would typically be my first answer, but that skill isn't so great today.
     Some of the people in those books I read enjoy their seizures so much they don't take their meds. I'm not like that because I know it could be hurting my brain without me realizing it was happening, slowly over time.
     So please do not misunderstand this post. It isn't a call for everyone to flush their meds and try to embrace the "fun" side of epilepsy.
     I want a cure for other people, the ones who feel stalked and afraid to go out because it might happen where people can see. I especially want a cure for the children whose brains are being worn out by uncontrolled storms day and night.
     But I want to stay the way I am and keep working with my neurologist for control.

Thursday, June 23, 2016

One Year Later

     I always knew they would come back, but I didn't think it would be so soon. It was one year ago today that I opened my eyes and realized my cheek was resting on the warm cement in our back yard. There was no question in my mind what had happened because I remembered the music...Stevie Wonder singing in my ear...followed by the memory of that same song being sung to me when I was a little girl in elementary school.
     My mind had traveled back there, but my body had remained stuck in 2015. It was the same feeling as always, but deep enough to make me go unconscious on the sidewalk. I treated it as I had the last one in 2013, like a fluke, something that had happened because my mind and body were stressed out.
     I could never have guessed the journey that was ahead of me over the next nine months or the way it would change me and how I view my unique condition and myself. Like that seizure in 2013, I thought it was a one-time occurrence, a breakthrough seizure not to be repeated.
     There were only two really bad parts to the many months of active seizing, the car wreck the following week and the reaction I had to that awful drug. When you lose consciousness while driving, the seconds before and after opening your eyes again are terrifying because you don't know if you hurt anyone else.
     It still scares me to remember that I almost had a passenger last June when I was driving down to visit my son in Richmond, and it's hard to describe the intense wave of relief that washed over me when the lady who stopped to help assured me that no, I hadn't driven my car into anyone else's.
     When I called my husband to tell him what had happened, I felt guilty, like I had done something bad on purpose. That's how it is with epilepsy; you are embarrassed even though it isn't your fault.
     Before my seizures came back, I thought there were oodles of new drugs to choose from, but now I know my choices are limited. After going out of my mind on Fycompa, I'm even more wary of the chemicals available to keep my brain from doing its weird little thing.
     The drugs to treat my disease are much more frightening than the illness itself, or at least the version I have.
     Since last June, I've done quite a bit of research online, searching for others with the same seizure type as me. I recently found a woman who described hers as "psychic seizures" and said they had changed her way of thinking from the person she was before.
     At last, I thought I had found someone else like me, but then I kept reading. She had had enough of her "psychic seizures" and wanted them to go away for good. I stopped reading and went back to embracing my freakishness.
     I have made a lot of new online friends, other epileptics who have "it" much worse than I do or whose children have epilepsy syndromes. People whose seizures are under control don't talk, write or blog about it because of the stigma associated with epilepsy and because it really isn't on your mind much when a couple of pills a day keep it under control.
     All I hafta do is look at some of my seizure videos to remind myself how hard I try to hide it. The ones I filmed while outside in plain view of my neighbors look different than the others; my eyes dart around to see if anyone is witnessing my weirdness.
     I had more than 150 seizures before the Depakote Sprinkle made them go away. Only once did I do something I had never done before, and that is try to go deeper into the seizure. I'm not sure what I was thinking at the time.
     Usually, it just happens, and I wait until it's over. If I'm in a public place, I try to look normal, whatever that really means. And if, God forbid, I happen to be behind the wheel of a car, I fight it with all of my being.
     But that one time last winter, I was in my basement when the aura came over me and I sat down on the couch. It was a safe place with nobody else there, and I decided to give in to the experience. As usual, I was going back in time.
     The Brady Bunch was on my mind, which I watched in reruns every day after school when I was so young that my homework was easy enough to do in front of the television.
     There was enough warning for me to film the entire seizure, which felt like it lasted a minute or so. I was surprised and a little scared when I looked down at my phone afterward to find that I had been out of it for seven and a half minutes.
     The video isn't very different from the other ones, except my eyes are fixed for a much longer time and I'm blinking a lot more often. I didn't come out of it with any particular memory of where I had been during that time.
     Like I said, I'm not sure what prompted me to try and "seize deeper" than usual, but it's an experiment I won't be repeating.
     In an ideal world, I would be able to control my seizures at will, without medication. In times of stress or when I needed an escape, I would simply will myself into that other state of mind, long enough to come back with my spirits lifted but not long enough to damage my brain.
     That isn't an option at this time in this world, so I will keep taking my meds twice a day and hope they continue to work because even though I always knew my seizures would come back, I wasn't ready for it to be last June.